Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.

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Friday, January 22, 2010

Baby Isaiah and the Value of Human Life

Readers will recall I that wrote about Baby RB in Britain and a somewhat similar case has arisen in Alberta, Canada. Baby Isaiah James May was born last October and suffered severe oxygen deprivation. After a complicated and prolonged birth the baby was placed on a ventilator at Rocky Mountain Hospital and transferred to Alberta Health Services (AHS) Stollery Children’s Hospital. On January 13 the parents received a letter from the AHS that stated their child’s doctors thought everything had been done to help Baby Isaiah. In their estimation “the diagnosis is unchanged: your son suffered severe anoxic brain injury at birth and has irreversible brain damage. There is no hope of recovery”. The letter went on to state that “it is with sadness that we are advising you that your treatment team will discontinue mechanical ventilation support to Isaiah after 2p.m. Wednesday, January 20, 2010”.

I cannot imagine what Baby Isaiah’s parents, Isaac and Rebecka May have been through since their son was born. But even by the most cold hardened standards the letter quoted that I found on the CTV.ca website is hard to read much less accept. Like Baby RB, I have no idea what is in the best interests of Baby Isaiah. But Baby Isaiah’s parents do not want their child to be disconnected from his ventilator. The Mays and their lawyer want the hospital to delay their decision for 90 days. AHS and the Mays went to court in part because the AHS told the court they were willing to wait 30 days. Madame Justice Michelle Crighton is considering the position of the parents and AHS. She has stated that she needs time to consider the arguments presented to her. In short, the court will decide Baby Isaiah’s fate.

I find the case of Baby RB and Baby Isaiah disturbing. I cannot fathom how the parents and doctors cannot find common ground and work together and as a team decide what is in the best interests of the child. Such a divide between parents and doctors makes me wonder if I was lucky to be sick at a time when life and death decisions such as those my parents faced with me were clear cut. As medicine has advanced people are living longer as are infants born with profound physical and cognitive deficits. But what sort of life are people leading? And more to the point, how does society value those humans that have profound physical and or cognitive deficits? If I have learned one thing in my life it is that individuals with a disability life is subject to debate. That is, doctors, nurses, administrators, and people like Peter Singer feel free to openly question the quality of life for those with a physical or cognitive deficit. So called normal people, adults and children alike, are a class apart. The people with a disability that are at the greatest risk include infants born with profound physical and cognitive deficits and genetic conditions such as Trisomy 13 among others. Based on my reading, particularly the experiences of parents whose children are born with profound and complex disabilities, parents are given the illusion of choice and informed consent. The information they get from the doctors charged with caring for their children is heavily edited if not directly misleading. The underlying assumption made is their children are not fully human and as such do not have the same rights as others.

Two parental experiences in this regard have haunted me recently. First, the experience of Barbara Farlow as expressed in “Misgivings” published in the Hastings Center Report (September/October 2009) and Sam Sansalone’s story of how he fought to save the life of his daughter, Katya, who was born with Trisomy 13. For more about Sam Sansalone’s experiences see What Sorts of People and the Advisory Committee of Family to Family Connections at Alberta Children’s Hospital. Sansalones’s experiences should cause each and ever person to think long and hard about medical care, medical ethics, and what it means to be human. Sansalone’s does not mince words: He maintains that “in Canada profoundly disabled kids are routinely—and intentionally—not treated with life saving intervention”. Based on his experience, he thinks that when his daughter was born eight years ago “the clear mandate, at least at that time, was that you don’t save these disabled children’s lives. You allow them to die—even though the needed interventions are exactly the same as would routinely and unquestionably be given to quote unquote normal children” I disagree with just one aspect of Sansalone’s assessment of the situation. The exact same thing takes place in the United States. Surely Barbara Farlow’s experience with her daughter Annie is evidence of this. Farlow wrote about her experience having a child with Trisomy 13. She knew her decision to have her baby and knowing about her condition was not common. She was well aware of the fact most children born with Trisomy 13 live a very short life, just hours in some cases. But when her daughter was born she did not have the expected brain defect or cardiac condition that was anticipated. She was not blind or deaf and her major organs were structurally sound. She recalled being shocked and delighted until a medical fellow asked her “Do you really want to treat this child? She’s going to have disabilities”. Farlow’s daughter died some time later and she had a “nagging sense” that the events at the end of her life were illogical. Over the next two years what she learned was shocking—that her daughter not only needlessly suffered before she died but her death was most likely preventable. Imagine her dismay when she read the coroner’s report that declared the events of her daughter’s final admission to the hospital “do not represent appropriate forms of care”.

Focus here: “do not represent appropriate forms of care”. Are infants such as those with Trisomy 13 out of the norm? Yes, but this does not mean they are not human. It does not mean they should be allowed to die and experience a “slow code blue” as Farlow’s child did on the final day of her life. This phrase “do not represent appropriate forms of care” does not begin nor does it end with children with Trisomy 13. The lack of appropriate care starts at birth for some, at the onset of a given disability later in life for others such as myself. But what this phrase reveals is the lack of appropriate care is a social not a medical failure. I contend the experience of Sansalone and Farlow is akin to the ripple effect on a pond and they are toward the center. People like me are farther away from the center but affected nonetheless. All human life has value and I for one cherish my autonomy. Yet I am not always autonomous, fully independent, because I am paralyzed. This rarely bothers me and I have learned there is nothing wrong with asking for help from time to time. What does keep me awake at night is the knowledge that others consider my existence a tragedy or that I am living proof of the limits of medical science. What this narrative overlooks is quite simple: I remain a human being.

7 comments:

One good thing that's happened in this field recently though: a jury found a mother who gave her brain-damaged son several overdoses of heroin, the last of them fatal, guilty of murder in England two days ago. She got nine years to life, the lowest sentence the judge could pass. However, a lot of people in the phone-ins and press couldn't understand that this was premeditated murder. (I wrote this about that and another involving mercy of a different kind.)

Matthew, You surely have followed the case you refer to in more detail than I have. But I remain troubled that she got life in prison in name only. As you point out she was given the minimum sentence and could be free in seven years. I would like to think the life of any disabled person is worth more than a mere seven years.

Nine years is the absolute minimum she will serve unless a court either annuls her murder conviction, or increases the tariff. Actually, the tariff doesn't guarantee that someone will be released after that time; it is the minimum time after which she can even be considered for release.

However, life usually doesn't mean life in the UK, unlike in many US states. "Normal" murders attract twelve or fifteen-year tariffs and where the murder is part of a violent robbery or gang attack, the tariff is much higher. It tends to mean life only for serial and sexual murderers (e.g. Myra Hindley, Dennis Nilsen).

William, thank you for your interest an summary of the May, Sansalone and Farlow children.

As the mother of Annie Farlow, I have a unique insight.

Perhaps you assumed that Annie's tragic death occurred in the US because the events were published in an American medical ethics journal. The events occurred in Canada, at the same hospital as the Sansalone child, and incredibly the children shared a primary doctor, over a year apart.Annie's story was published years earlier in the Canadian Pediatric Journal.

To their credit, the Sansalone family expended an incredible effort with the Hospital to affect systemic change regarding the medical care provided to children with genetic conditions that have a wide range of outcomes.

After Annie's death, and before meeting the Sansalone family, we too made an immense but unfortunately futile effort to affect satisfactory change with the Hospital.

We were inspired by a meeting at the Office of the High Commissioner's Office for Human Rights in Geneva, Switzerland. When regarded through a purely human rights lens, and in recognition of the Universal Declaration of Human Rights and the atrocities that led to its development, we realized that the systemic circumstances involved with our daughter's tragic death definitely required further pursuit in a human rights tribunal or court.

Herein lies one of the important differences between baby Isaiah and Annie and suggests a reason why a covert culture of withholding treatment might develop. A dead infant with predicted disabilities essentially has almost no value in Canadian courts relative to the cost of litigation. However, if a living child's rights are threatened, there are many advocates and laws in the system that will ensure that the family has the benefit of due process of the law as baby Isaiah's situation reveals. After death, the family's desperate pleas to lawyers of allegations including missing medication records, missing narcotics and a DNR order without informed consent are met with shrugs of indifference. Too bad. You trusted, you believed, your loss.

We do not consider our daughter's circumstance to be related to resource limitations. We only wanted to provide "best interest" medical care in a manner that was irrespective of disability.

The Hospital knew, from first hand experience with the Sansalone child and an older child known to them with full trisomy 13, that children without the serious brain defect have a chance at longevity. Thus it appears that Annie's care may be one of discrimination against disability or perhaps against disability of a condition that can be "cured" through prenatal testing and termination rather than one of limited resources.

Our goal, as we continue to pursue answers and missing records that presently obstruct justice for Annie, is to bring the issues involved to public awareness and discussion. Increasing financial challenges will further threaten the vulnerable. Limitations or restrictive policies must be made with great caution, must involve the public and constitutional representatives and they must be made public. To ignore or refuse to believe that restrictions are necessary will, in our opinion, only encourage a culture of covert withholding that very well may operate without fairness and due consideration of values inherent in human rights laws.

Perhaps the greatest tragedy of Annie's life is that in a developed country, at a much respected hospital, under the care of many highly trained and esteemed doctors, with omnipresent educated parents who claimed to have an excellent relationship with the staff, a child suffered terribly without offers of palliation or comfort as she endured gradual asphyxiation.

I have some stories I'd like to relate, but can't respecting my friends' privacy. But I'm working with many amazing people, and we're doing remarkable things that make it clear to me that given the right supports everyone with a will to live can change lives, and live meaningful ones themselves. I know of many 'able' individuals who do much less with much more.

I feel for parents who cannot care for their children because of disabilities, but it is a social failure if we can't help them. And for institutions to deny parents the help they need for their children, I think that we need to pull the plug on the institutions... no those they are charged with caring for.

Complicit, Yes, the lack of care for people, especially children with a disability, is a social failure. The fact the conditions in institutions that are charged with the care of the disabled and elderly are substandard is also a social failure. I would love to hear more about what you are doing as much need to be done. I worry less about myself as I merely have a physical deficit than I do about those with cognitive deficits or mental illness. These people encounter far more bigotry than I ever will.